We had made friends with families from all over the world. We had connected and that was the best part of life with diabetes. The worst part also reared its head in March. For every parent who has a child living with diabetes, their worst fear is to have their child lose their life to this disease. A parent is never to outlive their child and in the past month it has happened to far too many parents. I am not sure why this has happened. Is it a product of technology that we are learning more about these deaths? Is it a product of the fact that we have become such a close knit community? No matter what the reason, we had heard of four death of children under the age of 21 who had either succumbed to a low at night or who ran into trouble with highs and slipped away from their families. There is no greater loss. There are no words.
These deaths cut me to the core. I was heartbroken to know that children, in some cases very close to my own child's age, and in two cases diagnosed at the same time as my child, had their lives cut short. I began to wonder about my own focus. I have always worked very hard to make life better for those living with diabetes now. As much as I would love a cure, I have never been able to see it happening in my lifetime. I felt it was better for me to focus on keeping those who have the disease healthy and in the best shape that I could. I felt that if a cure was found that they would then be able to move forward with only memories of life with diabetes and not carry forward the complications. These deaths made me wonder if my focus was wrong. Could it be that a cure was the most important thing of all? Could it be that I should be focusing on fundraising and getting people to really dig deep to help with this? I was truly at a loss. I did not know which way was right...until Monday.
This past Monday changed it all. It put me back on track and made all of the doubts disappear. You may remember if you follow www.diabetesadvocacy.com, that pre-budget consultations were recently held regarding the impending Newfoundland and Labrador Spring Budget. I encouraged people to send letters and to ask the Minister of Finance to see fit to expand the existing insulin pump program to include all adults with Type 1 diabetes. It was too painful to have to deal with young adults who had received a pump as a child but who could not afford to use it once they turned 18. It was killing me to have to tell my son that his career choice would have to be based on income and health benefits.
My son and I had had a conversation about career choices on that very Monday. He looked at the garbage truck going by and jokingly told me that he was going to be a garbageman when he was finished school. I told him that he couldn't. He would not be able to afford his insulin and supplies. I quickly gave him a total of over $1000 a month in diabetes supplies and said that the pay of our local garbageman just would not cover it for him. He then asked what if his brother decided to be a garbageman? I said that as upset as I would be because I obviously am hoping that my boys do a little more with their education, that he could be a garbageman if that made him happy. I further explained that his brother did not have the same high health costs to cover and he could live on that salary.
Monday evening I received an email. The Newfoundland and Labrador government had announced in their spring budget that they would be expanding the existing Insulin Pump Program to include young adults aged 18-25. I could not believe it! We had left our pre-budget consultation planning to come back and continue this fight next year. We were sure that our message had not been received. I had not heard back from a lot of people and thought that the message was not being spread. We vowed to do a much better job for the 2011 budget. This would be a learning experience but we would not give up.
Well we still will not give up but we have once again overcome one more obstacle. We are one step closer to coverage for all people with diabetes in the province. My month was made. Our work had paid off. People did stand up with us. We did make a difference! I have not been able to fund a cure for my son, but I have been able to improve the financial security of many Canadians living with diabetes through changes in the Disability Tax Credit. I have further made a huge difference in the life of my son and many, many other young people living with diabetes in Newfoundland and Labrador by working with others to see coverage for insulin pumps. I know my focus and am so proud that it has paid off so well. Thank you once again to everyone who helped us to see this happen!